Caring for someone with dementia: How to cope

Caring for someone with dementia is life-changing and you will experience a whirlwind of emotions including guilt, grief, a sense of loss and even anger, as you watch the person you love for change.

Dementia caregivers can struggle with regularly adapting to a new daily routine as stages of dementia progress, and the long term symptoms of a person with dementia such as memory loss. It can seem overwhelming but TV and radio presenter John Suchet, who has been through it, says the best thing you can do is “get out there and live a normal life”.

Losing someone to dementia

carehome.co.uk spoke to TV and radio presenter John Suchet and his wife Nula who met while their spouses were living with dementia in a care home.

They experienced first-hand how draining it can be to lose a loved one to dementia, but also realised trying their hardest to live a normal life was the key to coping.

Nula’s late husband, James Black, died in late 2014, 10 years after being diagnosed with Pick’s Disease. Bonnie Suchet, John’s wife, who was diagnosed with dementia in 2006, passed away in April 2015.

For John, the worst part about caring for Bonnie was that he was unable to talk to her about her condition.

“To the day I lost her, Bonnie never knew she had dementia, Alzheimer’s, she never used the words. So, you’re all bottled up – it’s all bottled up inside you – you can’t talk to the person with it,” said John.

Nula added: “They just go off and do their own thing and they’re not with you, mentally or physically – they’re gone. You’re left trying to hold on to this person that isn’t the person anymore.”

Coping with feelings of guilt

For people caring for a loved one living with dementia, the feeling of guilt is common – the ‘G’ word.

John revealed: “It’s like a parrot on your shoulder the whole time. I was very fortunate; I had an Admiral Nurse and he said to me, ‘you’re not hurting anyone by having this relationship. What would they want for you if they knew? What would you want for Bon and James if it was the other way around?

“Whatever you do, try not to feel guilt over it because if you don’t get out there and get a life then dementia has got you too and it’s got two for the price of one. If Nulie doesn’t get out and get a life, then it’s got four for the price of two. The way to beat dementia is to carry on as far as you can living a normal life with normal relationships.”

Nula and John said the best advice they could give is to have a life outside of being a carer; make the effort to get away for an hour or two while they are still living at home, and when they move into a care home, go on and make a life for yourself.

“I was actually told ‘if you don’t get out there and live a normal life then dementia has got you too, it’s got two for the price of one. So, live a normal life,” John said.

Dealing with dementia

It can be extremely difficult looking after a loved one who is living with dementia. Below, we have provided some advice that could help you cope with these challenges.

You might think that looking after yourself should be the least of your priorities, but as the physical and mental challenges you must cope with can have dramatic effects on your own wellbeing, it is important you think about yourself too. Otherwise, you can risk losing yourself to dementia as well.

Sarah Oakwood, who is an Admiral Nurse for the Weston Area Health NHS Trust (WAHT) and supported by Dementia UK, has worked in dementia care for 30 years. Admiral Nurses offers specialist dementia support to those in need.

The people Sarah supports often talk about feeling a sense of loss, that they might be experiencing a protracted bereavement process while their loved one is still there and that they don’t have the same relationship as before.

She said: “It can be a very isolating experience. It’s often about giving people permission to feel whatever it is they’re feeling without judgement and explaining to people that everybody’s experience will be unique.”

Credit: Sarah Oakwood

“The sharing of experiences is massively important. Don’t be afraid to have difficult conversations with family members or with the person living with dementia. Communication is key in all areas, because that’s what breaks down barriers and stigma and that can only ultimately help.”Educating yourself on dementia and keeping your routines can also help you cope.

“You kind of need to name the dragon in order to slay it. It’s important to understand more of what that [dementia] might look like in order to have a better understanding of how to work around the challenges; When they’re asking for their mum, how do I respond to that? What do I say to them?”

“I think routine is really important, not only for the person living with dementia but also for the carer and carrying on building memories as you go on that journey; doing things that you loved before, for as long as you can, and doing things you wouldn’t necessarily have done before.”

Advice to help you cope when your loved one is living with dementia

Educate yourself on dementia

Learning as much as possible about it will help you identify what to do in certain situations, particularly around the behavioural changes the person living with dementia goes through.

Stay active – physically and mentally

Exercising is beneficial for your wellbeing whether you care for someone with dementia or not, but in this situation, it can allow you to take a break from being a carer to recharge your batteries. This is also true for reading a book or other activities that activate your brain.

Do things you and your loved one enjoy

Even though your loved one is living with dementia you can still create positive experiences. Activities such as listening to music or going for walks or together can help you feel connected through something other than being a carer for your loved one.

Stay in touch with friends and family

Seeing friends and family for a coffee, lunch or other activities help you to have a life outside being a carer. This can be a vital boost and gives you a chance to get away from the stress and pressure of caring for someone with dementia.

You are not alone – talk about it

Do not be afraid to ask for help and support. It can be comforting knowing you are not alone, which is why many people find solace in talking to other people going through similar experiences. Do not be afraid to talk about it, there is nothing to be ashamed of.

Below are a few examples of where you can talk honestly about caring for a loved one living with dementia.

• Memory cafés, also known as dementia cafés, provide a safe space free from judgement where you can go for a cup of tea and a chat with an experienced professional who understands the disease, or meet with others in your position. Memory cafés are spread across the country, so chances are there is one near you.
• Talking to people online has helped many coping with caring for a loved one with dementia. There are a number of forums online where people share their experiences, give advice and support. This can be a good start if you find it daunting to speak to someone face to face.
• Admiral Nurses can provide specialist dementia support to families during difficult times. With their vast experience, they work closely with everyone involved and provide comprehensive expert guidance to help you on the journey.